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Author
Topic: New Face of HIV/AIDS Project (Read 3329 times)

I am currently working on a photo essay type book that will be focusing on both long term survivors of HIV/AIDS as well as newly infected individuals and everyone in between. I am looking for people off all backgrounds (race/gender/age/etc) who are living (and in some cases dying) from this disease who would like to have their stories told. Must be of legal age or have written release signed by legal guardian and must be willing to be photographed (those with issues of anonymity can be worked with using creative photographic techniques) as well as interviewed for this project. The current project is envisioned as starting with a foreward and brief history of HIV/AIDS and it's early impact on not only the gay community but the larger community as well followed by individual profiles of various HIV patients which would include their own stories in their own words as well as basic interview questions and photographs of the individual. Unfortunately, due to being a starving artist (aren't we all) and not having a financial backer or book deal for this project, participation would be on a voluntary and unpaid basis.

Would you please provide more information about yourself and who you represent? I am skeptical to partake in anything without some background from the "artist" and what exactly are you planning to do with this photo essay?

I hate to be difficult, but I, like many others, have seen this type of thing before and have seen this one person's attempt to make it off of people he or she has real no concern for...we aren't here to make you money...so please, inform us as to what and who you are.

Thanks.Jeromy(who thinks this is a serious reply)

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Dx 2005ATRIPLA

Dan J.

Would you please provide more information about yourself and who you represent? I am skeptical to partake in anything without some background from the "artist" and what exactly are you planning to do with this photo essay?

I hate to be difficult, but I, like many others, have seen this type of thing before and have seen this one person's attempt to make it off of people he or she has real no concern for...we aren't here to make you money...so please, inform us as to what and who you are.

Thanks.Jeromy(who thinks this is a serious reply)

I agree with Jeromy. Please tell us more about yourself and this project.

What was I thinking since I don't think I have even filled out a profile yet?

I am a 43 year old man who has been HIV positive since the early 80's (one of the first wave - tested poz in 1983 immune system was in such bas shape the doctor's best guess was I had had HIV for at least 2 or 3 years at that point)). Also co-infected with HEP C at the moment which is a big assed bummer. I work for one of the best HIV docs in DC (not gonna mention his name but he's also known as "The Rock Doc" and is pretty well known throughout the country (USA I mean). I think the best way of getting to know me at the moment is by looking at my homepage at http://hometown.aol.com/eazymeat (don't ask - it's a Frank Zappa song and I thought it was clever when I picked it) and at my so called blog at http://thelongstrangetrip.blogspot.com/. Good deal of reading there but a lot can be skipped over if you just want to find out about who I am and what kind of guy I am (or I can just save you the time and tell you I'm a nutjob waiting to happen lol!)

As to the project at this point it is something that is only in the very beginning planning stages... having been HIV+ (and almost dying from it more time than I can remember) my idea is to present people with the new faces of people facing this disease and how they each manage in their own ways with it. It seems unfortunately that since HIV has come to be regarded as a "manageable disease" by the mainstream that understanding and awareness of what we still go through on a daily basis has dwindled and (in my office and the entire DC area) we are seeing a marked increase in new infections amongst young people and old alike. There is a certain and very strange apathy that seems to be happening and part of the point of my project is to remind people we are still here and still fighting and still suffering and still (unfortunately) dying. Mainstream people are for the most part unaware of the massive amounts of toxic chemicals we have to ingest on a daily basis or the side effects caused by those very meds that are saving our lives (for the moment at least). I see (even in some doctor's offices) people who believe that just because our "condition" is "under control" and HIV is no longer considered the death sentence it once was we should be feeling as healthy as they do and be able to do the all the things they do and we once were able to do. My concept is to put together a book of he new face of HIV - the ones who are managing well, the ones who can't afford treatment, the ones who aren't responding to treatment, and so forth. The idea is to put faces back on this disease and remind people that this plague is no over by a long shot. The idea is to not allow us to be forgotten and to remind people who we are and what we go through and that despite lab works saying we are "healthy" many of us are not in the stricter sense of the world and that despite the amazing progress that has been made we are not the same as we once were healthwise and likely never will be. While much of this sounds negative I want to also focus just as much on those who have never been treated and somehow stayed healthy as well as those of us who have been through every med so far and somehow managed to rise above our situations. Under no circumstances would I want this to come out as a feel sorry for the HIV community - only to understand and empathize with us on a more realistic level.

The project would be coauthored by my partner of 11 years (who is HIV - and plans on staying that way) - he has considerable writing experience and is a published writer (I'm not dumb enough to try to take on a task this big without someone with some experience and who better to help than someone who understands the daily struggles of someone with HIV). This is by no means a project in the works - it's a project in the idea stage which we are going to pitch to several gay friendly publishing firms.

Despite the ugly topic of money why yes I do hope to make a small amount of money from this once all is said and done - I do work with several local charities and would expect that if this project were to pan out I would donate some portion of the proceedings to some of these charities (Whitman Walker sure could use some money btw so if any of you have any spare change laying around in your couch cushions please send it to them!). Bottom line is yes if I spend a huge amount of time and money on this project (which would be a given) I would expect to be able to recoup that money as well as put some money in my bank account to pay bills and eat. Writers, fundraisers, activists, etc all have bills that have to be paid just as the rest of the world does so if your main concern is about whether I (or anyone for that matter) is going to make a little money and you find that issue more important than reminding and reinforcing to "outsiders" that this is still a huge issue with many unresolved issues (see my post in the mental health topic for a good example) then this is most definitely NOT a project you even want to consider. Please also know that I am not a professional writer or photographer - this is a personal attempt at paying back some small part of the debt I owe to the universe for having survived this disease when EVERY one of my friends from that time died (not some - ALL OF THEM - I am the only one left from the group of friends I came out with. This is (despite the fact that making some money to live on would be nice) a labor of love and a reminder wake up call to those who forgot (or didn't even experience) the horrible events of the early 80's when so many of our friends died while our government and our friends stood by and did nothing. Those who forget the past are condemned to repeat it and all you know.

I appreciate your inquiries and hope this answers at least some of your questions about me and my motives for this. After working in the HIV healthcare industry and seeing what not only the healthcare providers like Aetna and Cigna are doing to make it next to impossible for private doctors to treat HIV patients without losing their shirts (you should all really check into your EOB's from your healthcare companies - they are now using the prices Medicare pays as the STANDARD for all treatments which boils down to pennies on the dollar if we are lucky). Many of your doctors are losing money and you don't even know it. In the builiding I work in we have seen 3 major HIV practitioners close their doors and retire because they were literally paying to see patients (that's not how it's supposed to happen you understand). We are being forgotten, taken advantage of and then told that despite the toxic crap we are pouring into our systems we are now "healthy". I do not want all of my friends who died in the first wave to be forgotten nor do I want myself or anyone else dealing with this disease to be forgotten or expected to be the same as someone who is "healthy". People need to see our struggles, failures, and triumphs for what they are - you see it isn't just the drugs keeping us alive it is our spirit and that is what I hope to capture.

Thanks again for your inquiries - if you have any further questions, suggestions, or concerns please feel free to contact me through either of the websites I have listed above.

i'm tellin you man - there's way too many people out there with too much time on their hands if that's how many idiots have been to my webpage- how friggin bored can you possibly be that you end up there treadin that drivel anyway?

you know after some recent experiences on another site (hep c related) where things between everyone suddenly and very weirdly got very ugly I can't tell for sure if you are just messing around joking wise with me or being rude but either way I kinda like ya dude you made me smile today

Brian thank you for your candor and understanding...I am sorry if I came across strong, but we get people in here sometimes who just want us to get an "A" on some paper...after reading about you...I wouldn't mind learning a bit more...I am actually writing a book base on my own journey...it's about HIV in the work place...

Send me a PM, and I would be happy to chat a bit more...

Again, sorry if I sounded rude...certainly not my intention...just more out of some weird mother duck protective thing I guess! LOL

No offence taken at all... I can certainly understand how you and others might feel about such a project with so little background info on the person proposing it... very normal reaction I think.

As I said at this point this "project" is no more than an idea that is just beginning to take form - it could end up taking any number of detours I suppose from a straight out art show to a minor film type documentary.... my preference at this point though is book form mostly due to my being an amateur photographer and my partner actually being a published writer.... just seems like the logiocal route but as I said who knows what's gonna actually come from it? I will try to drop you a PM sometime this week (got a busy one going on here) but you can always feel free to do the same to me.

Hi there.. My log in is, Are you kind.... I have 2 kids , 21 and 12. Followed the dead for longer then I can explain.. I always loved the dancing bears.... I'm a dork that knows All the lyrics... Ive been poz 21 years,,,

come here uncle john's band...omg!!! my very first concert was a greatful dead concert...unc chapel hill 1992!!! so much fun!!! brings back memories...memories from the corners of my mind...misty water colored memories of the way we were

lost

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I went to the doctor, I went to the mountainsI looked to the children, I drank from the fountainThere's more than one answer to these questions pointing me in a crooked lineThe less I seek my source for some definitiveThe closer I am to fine - Indigo girls

Always good and cool to see another Deadhead on the board. I tell you... there were a couple of years where literally the only thing that kept me alive was knowing I had a ticket for a Dead show a month or 2 down the road and I wasn't about to let Mr. Death deprive me of another ride with the Crew!

thanks perfectstranger for the good vibes and right back at ya! ...ah yes those were the times unfortunately the last show i went to i did not actually see them...for some reason i was chewing on my ticket and then dropped it (a friend of mine picked it up and went in with it cause he lost his) i found all of this out the next day...so i spent my time roaming the parking lot and meeting a lot of cool people...i must have been hungry if i was chewing on my ticket

cheers,lost

Logged

I went to the doctor, I went to the mountainsI looked to the children, I drank from the fountainThere's more than one answer to these questions pointing me in a crooked lineThe less I seek my source for some definitiveThe closer I am to fine - Indigo girls

I went to the doctor, I went to the mountainsI looked to the children, I drank from the fountainThere's more than one answer to these questions pointing me in a crooked lineThe less I seek my source for some definitiveThe closer I am to fine - Indigo girls